Penn and CHOP Launch the City's Only Adult Congenital Heart Center
May / June 2005
“Adult patients with congenital heart defects are not
well cared for in the United States. There is a real need
for special centers of excellence to provide comprehensive
care for adult patients with congenital heart defects. Many
of these patients do not have a normal circulation and have
potential for serious complications as they age,” says
Gary D. Webb, MD, director of the Philadelphia
Adult Congenital Heart Center.
To
help these patients, the Hospital of the University of Pennsylvania
and The Children’s Hospital of Philadelphia
(CHOP) have combined resources to create the Philadelphia
Adult Congenital Heart Center, the first of its kind in the
region and one of a few centers of excellence for adult congenital
heart disease (ACHD) in the country.
Today, there are approximately one million adults with ACHD
in the United States and about one percent of the population
is born with a congenital defect. The extraordinary advances
in cardiac surgery, intensive care, and noninvasive diagnosis
over the last 50 years have enabled these patients to live
longer and result in the enormous growth in the United States
and throughout the world in the number of adults with congenital
heart disease (Journal of American College of Cardiology,
Vol. 37, No. 5, 2001).
In fact, many of the advances in pediatric
cardiology were pioneered at CHOP including the Rashkind
procedure in 1960 which involved using a balloon to create
an opening between the atria of the heart that allowed
infants with very complex heart disease to be stabilized
before surgery.
Also, during the 1980s CHOP surgeons developed a series
of staged operations to repair the hearts of infants born
with
hypoplastic left heart syndrome that, until this time,
had no hope of survival.
“We want to be a multidisciplinary resource for the
region, not only for patients with ACHD but also for their
physicians. One of the Center’s important goals is
to follow and conduct research on these patients and learn
the issues they may face and how to best treat them now,
and in the future,” says Thomas
L. Spray, MD, Alice Langdon Warner Professor of Surgery at
the University of Pennsylvania School of Medicine and executive
director of The Cardiac Center and chief of the division
of cardiothoracic surgery at CHOP.
Generally, primary care physicians and cardiologists have
not been trained to care for the complicated ACHD patient.
As these patients reach adulthood, their pediatric cardiologists
often continue to monitor them because there are no other
specialists to whom these patients can be referred. “There
is a critical need to have a multidisciplinary team manage
the many issues these patients may present as they age, including
adult conditions such as high blood pressure, diabetes, hypertension
and pulmonary, renal and myocardial disease,” says
Dr. Webb.
Because the field is so new (pediatric CHD repair started
just 50 years ago), some of the problems these patients will
face as they age cannot be anticipated. In fact, children
who have undergone extremely complex repairs for conditions
such as hypoplastic left heart syndrome and other very serious
forms of CHD are only now beginning to reach adulthood. “Some
patients may have heart rhythm problems, others may require
additional surgical procedures to replace artificial grafts
that have been outgrown or have degenerated over time, and
others will need heart transplantation. These issues need
to be addressed in a very consistent fashion,” adds
Dr. Spray.
“One of the most common complications these patients
face as they age is cardiac arrhythmia. At Penn, we have
special expertise in this field, as well as in heart failure
and heart transplantation,” says Michael
S. Parmacek, MD, professor of medicine and chief of the division of cardiovascular
medicine at the Hospital of the University of Pennsylvania. “In
addition to cardiology and cardiothoracic surgery, we have
expertise in maternal fetal medicine to provide care or consultation
to patients who want to have children and in imaging, specifically
in cardiac MRI, which is particularly well suited to diagnose
complex forms of ACHD.”
All physicians involved in the Philadelphia Adult Congenital
Heart Center will have privileges at both the Hospital of
the University of Pennsylvania and CHOP. The nature of the
patient’s ACHD, comorbidities, and other factors will
determine where the patient receives care.
|
